Poetry, thoughts, snippets, and shenanigans

Tag Archives: autism

Hello, all. I know it has been quite a long time since I have last posted here, and I apologize. There have been SO many things going on over the last two years and I am finally ready to “talk” about it.

In my last blog post, I mentioned PTSD and some of the things I had been experiencing in connection to that. Well, about two weeks after that blog post, I was diagnosted with CPTSD. That’s Complex Post Traumatic Stress Disorder. What makes it complex, you ask? Well, first PTSD is contacted when a person experiences a traumatic event that causes flashbacks, anxiety, depression, insomnia, and various related symptoms. The complex part comes when a person experiences multiple traumatic events, each of which causing PTSD by themselves. What sometimes happens is I’m triggered by something & I begin having flashbacks from one of the traumatic events, which in turn triggers flashbacks from another traumatic event. So, basically, the flashbacks can piggy back on each other, if you will. It’s like reliving each trauma all at once. It’s scary as fuck, let me tell you.

Then, about a month and a half after my diagnosis, my mother was diagnosed with mandibular cancer that metastasized to her head and neck.

I was in school at the time, working, dealing with how to cope with my triggers, learning about my own disability, and then trying to figure out how to cope with my mother’s diagnosis. Things didn’t go very well.

Before my mother could begin her radiatin & chemotherapy treatments, she had two or three surgeries…one of which was emergent as she had spontaneously begun hemmorhaging from the tumor site in her jaw. Things just weren’t going well at all for her, and I had no idea how to help her. I had no idea how to help myself.

In September of 2015, I dropped all of my classes and took the entire month off of work so I could bring my mother to her radiation and chemotherapy appointments. I was with her as often as I possibly could be, but it still wasn’t enough for those in my immediate family.

Tension built between myself and my siblings & dad. It got to the point where I felt unwanted in my mother’s house. I felt as if I wasn’t allowed to even visit my mother, and God forbit I talk to her about my life.

No one was communicating with me, and I had no idea that her cancer had spread or that she was getting worse. I was spreading myself so thin and no one told me the most important information I needed to know. That hurt like hell.

In October of 2015, my engagement to my fiance ended, and I was forced to live with a friend. Not a week after living there, he began verbally and emotionally abusing me…especially after a few drinks of whiskey. I had no one to talk to about anything, because my mother was the one I talked to about these things. I was lost, confused, and alone. My sisters weren’t talking to me, and my father threatened to cut me off from my mother’s last days if I continued to tell her what was going on in my life. I had never experienced anything like this before. I had no fucking clue, really, what was expected of me…and I was punished for it.

I began drinking alone in my bedroom and isolating myself from the other cohabitants in the house, except for my son. My son, who is high functioning Autistic, was also a part of the abuse from my roommate…albeit indirectly. He would constantly complain about my son, no matter what he did or didn’t do. I could never do anything right as a parent, either.

No matter where I went or who I spoke with, I was wrong or not good enough. Depression weighed on me and I drank away the pain every night.

Then, on January 25, 2016, my mother passed away. Never have I ever imagined a pain so deep. Depression took me over and I drank…A LOT.

Then, one day around mid February 2016, I decided I was sick of contributing to my own depression. I was, also, sick of feeling extreme anxiety to the point where it made me physically ill. I stopped drinking alcohol & coffee old turkey. Just like that.

Oddly, that was the absolute worst part of my life. As of April 1, 2016, my son and I were homeless. Exactly two months after my mother’s funeral, my son and I were living out of my car and sleeping in a hotel (thank you, tax refund). That only lasted about a week, before a friend of mine offered to pay for another week. Praise Jesus! …but it was only one week, and we were on a waiting list for housing still. I have never been so scared on my life.

At the end of the second week, my very dear friend, Selynda, allowed us to stay with her. She will never understand the gratitude I feel for what she did for my son and I.

To break up all of the depressing parts of life for my son, he stayed with my cousin in Newport for a week. Man, did he have a blast! He hung out with his cousins, learned some boy stuff, and began to grow into a fine young man. During this time, I got the phone call that we had an apartment. FINALLY, a break from it all! Twenty five days of being homeless was coming to an end. Thank, God!!

I surprised him after school the following week, after I had gotten the keys and cleaned it up. (Not a good idea, btw 😉) Finally, our own place that we could call home. A place to relax and just…be.

All we had for furniture was my son’s twin bunk beds, an end table, a bar, a Hoosier, and a deep freezer. The rest of our belongings were odds and ends, clothes, and boxes I hadn’t gone through in about four years. Everything fit in the apartment…even my 60 gallon fish tank & stand.

I was elated to have my own place, but that ended abruptly one day. I honestly have no idea what happened, or what triggered it, but I just started crying uncontrollably. I cried every day for the first month or so. Then summer began to rear its ugly head and the heat on the third floor became intense quickly.

Before I knew it I was having kidney issues, my son was having difficulty adjusting to everything, and I was ready to throw it all in. Just fucking quit life and die. All of the wrong people were helping me, at this point, and the depression got a hold of me again.

It took me too many months to become aware enough of the situation to do something about it. However, it was getting there. I could see it, but there was soooooo much other crap in the way. I was clawing my way out, suffocating in the dirt on the way out, but I never quit. I never gave up. Not for anyone or anything. Not even for my son.

I did it because I had the support of my friends, and my therapist. I even had my son in my corner, but he was going through a battle of his own…a battle that he couldn’t control. So, I had to be there for him and myself. Then Christmas came. Fuck. My. Life.

My first Christmas without my mother, or really any semblance of a family, and I was unemployed. Oh, and I had received an eviction notice, unless I paid the rent I owed before January first. No idea if or when I would be approved to the disability I had applied for during the summer.

Just before the new year, I got a letter from the VA detailing my disability payment and other pertinent information. In the next envelope was a check for my first payment, which included retroactive pay to the date of my application.

Things were beginning to look up 😊

For the first time since I moved in, I was able to make my rent payment in completion and on time. I was definitely starting 2017 off on a positive note. So, I decided to build on that and gave that one action some serious thought. What else could I do that can set me up for success?

I took care of some small things with the remainder of that VA check (new boots & sneakers, clothes, bills), so I was back to broke…but I felt so much BETTER! I had more energy and my outlook began to change. My thoughts became more positive and my body followed through by being more active and maintaining a good diet.

I’ve been detoxifying my home and my mind, and replacing it with only people and things that bring me joy. I am focusing on joy.

I still go to therapy every week…even when I loathe leaving the house or putting on pants. I still make the choice every single day to be happy and productive. I still fight like hell to maintain peace within my heart, and mind. I still struggle with sleep (although it has improved), and anxiety. I still struggle. However, I still choose not to let it defeat me. It’s not an easy choice to make when I open my eyes and all I want to do is keep sleeping and allow the day to pass right on by. It’s not an easy choice when I forget about all of the good and positive things that I have in my life…like supportive friends, an amazing son, and the gift of life.

Where am I now? Four sizes smaller, sleeping well most nights, severe drop in depression and anxiety, my son is improving academically & behaviorally, we have furniture, I’m writing consistently, and I’m going back to school this summer. I’d say our lives have done a complete 180 from where we were two years ago. However, in the words of my illustrious sixth grade teacher, Mrs. White, “There’s always room for improvement.”

Wow, the past nine months have been so busy, but these last four have just about killed me! Between school, homework, papers, my son, his therapy, and life, I’ve just about got enough left over to be a regular person. This Spring semester was the hardest. I almost literally never really had time to just breathe and get organized. It was always one thing after another, and I was constantly trying to write papers in between EVERYTHING else. My weeks were constantly on-the-go, and could hardly get enough time to completely finish a thought…let alone write it down. However, the semester has ended and I find myself with some “spare” time. I have begun making para cord bracelets (see my Etsy page: www.etsy.com/shop/brennasbeans and facebook page: https://www.facebook.com/brennasbeans). I’ve also started a Facebook page for parents who have children with Autism (https://www.facebook.com/thorandherhammer), so parents have a place to vent, praise, and learn about their Au-some kiddos.

My hope for this summer: to do well in school, build my bracelet business, shed some light on Autism and what it’s like to be Autistic, work on my novel, read A LOT, and write more poetry. I did manage to write about six poems this semester (I’ll post them separately later), and they’re actually pretty good. Each poem has a bit of a description since they were written for my Intro. to Poetry class, but I’m happy with them. I’ve never had to write a poem where I was told that it had to reflect something/someone else or someone else’s work, so it helped me to exercise my poetry brain.

I took a class called Readings in the Short Story, and that one really helped me figure something out. I’m just not cut out for writing a novel. For our final paper, we had to either write a short story or do a research paper which had something to do with one of the stories we read for the class. I decided to use a section of my novel for this purpose, because I figured the story was already there and I could just edit it for content and structure. I seriously thought it would be a piece of cake. I was so totally wrong! It took me over a week to edit it enough to be somewhat satisfied with it, and I still wasn’t done. Granted, my professor said it didn’t have to be perfect, but it had to be perfect for me. I was my novel after all. I have no idea what kind of grade I got on it, but I did get an A for the class…like I’d get anything less ;). Anyway, after working on that section of my novel, I decided that maybe it would be better if I turned it into a short story. I could divide the entire novel into shorter sections that could stand alone, and would also tie into the other sections. It would help to alleviate the stress of getting the first draft done, and it would also make the editing less time consuming.

You see, short stories don’t necessarily need excessive detail and it’s a bit easier to leave out back story. You can just essentially write a scene and be done. There’s no need for great details, because it’s all left to the reader. However, by linking the short stories together, questions will be answered, but the reader can still use his/her imagination to put the pieces together…or they can choose to just see each part as individual stories. I so love this idea much better…plus I can throw some poetry in there and books can fly off the shelves!

On that note, I think I’ll get back to my motherly duties…you know…laundry, cleaning, and paperwork for the Little Dude’s therapy stuff.

Below is a blog from a fellow Autism mom. (The link to her blog is at the end.) I love the way she worded this. I am on the same page as she is, even if I have said it differently. I’ve said that I love my son’s Autism, but that’s only because it’s what makes him the wonderful, big hearted, loveable, quirky, strange at times, goofy, hilarious, and beautiful little boy that he is. As much as I love him, I fear for his future and how Autism will effect him and the changes he’ll make as he grows. The unpredictability is frightening. I fear for my son’s safety if he goes somewhere without me, because the adult he’s with might forget that he needs to be held & kept close by so he doesn’t wander off into the parking lot. I fear that he’ll have a meltdown and find a corner to hide in that could be dangerous if in public and I’m not there. My fears are endless…especially when it comes to the future.

Autism Sucks!

And it sucks – AUTISM SUCKS!! I’m filled with sadness as I sit imagining a life on the $710/month that our country is providing to meet the basic needs of disabled citizens. Even worse, I’m one of the lucky ones – my son was approved on his first attempt. I have been hit with a reality that has shot through my heart. I’m NOT posting about his college acceptance letter – I’m posting about his approval for a life of poverty and a reliance on government assistance.

I know that there are those in the autism community who will attack me for stating that “Autism Sucks,” and I’m envious of their perspective. I’m also wondering if they have blinders on to the challenges facing our family members. Do they know how many adults with autism are wasting away in group-homes? Do they share my fears? How do I embrace a disorder that has caused my son so much pain and struggle? How do I embrace a disorder in a society that does not provide a respectful life to its most vulnerable citizens?

Hating autism is not about hating individuals! It is about hating that individuals are in pain. It is about hating that my son was unable to ask for a drink when he was thirsty. It is about hating that our family members are vulnerable. It is about hating that we must fight for them at EVERY step along the way. It is about hating that they will outlive us.

I am beyond the ability to even imagine or consider what Mike would be like without autism. He was diagnosed prior to his second birthday; I had a few years to dream before the gap grew too wide to ignore. Those dreams are long gone, and I love him unconditionally. I love him, and HE is a wonderful gift, but I do not think that autism is a wonderful gift. I do not want an autistic grandchild, and I do not celebrate when I learn of a child being diagnosed. I know the challenges that come with the diagnosis, and it is not an easy journey. I also don’t feel like my son was ‘kidnapped’ or that there is a typical person inside of him. He is simply my son – Michael, my son, whom I love.

If you are one of the lucky ones, who celebrate autism, I respect your journey. I hope that you will respect mine – especially today, when all I see is an unknown future of challenges. Until we live in a world that PROVIDES a respectable life to people with autism, I am unable to celebrate autism. I’m far too busy at the fight!

Like this:

Being the mother of an Autistic child, and possibly on the spectrum myself, I completely understood every single thing this girl was saying. I read this from four different perspectives at the same time. I read this from the child’s perspective, the adult’s perspective, the onlooker’s perspective, and the poet’s perspective. This is one of those poems that grabbed my heart strings and yanked on them until I bled. She doesn’t hold back, and she doesn’t sugarcoat it either. This is definitely one of the most profound, and real poems I’ve read in a long time. I do not know the girl’s name, but the link to her blog is included at the end of the poem. Read, enjoy, and pass on. Thank you.

“What I saw”

I left the gym, I had to, because the music made me uncomfortable. I stood by the door.

I left the gym, I had to, because the music made me uncomfortable. I stood by the door.

I waited. I turned toward the door to the gym, and I saw a classmate burst through the door, an aide inches behind him. The aide grabbed a strap on his vest and stopped him cold. The student struggled. Aides thronged at the little windows.

I know what they saw.

They didn’t see someone asking to be taken for a walk. They didn’t see him begging to have some space.

They saw an escape attempt. A noncompliant escape attempt. A student trying to outsmart the teachers, to get his way.

They saw someone who didn’t understand the point of P.E.

They saw a runner.

He pulled away, and the aide pushed him back through the gym door, shouting “In we go! In we go! In we go,” his hands pulling and pushing as the student dug his heels in. Everyone else “encouraged” from the sidelines. I saw too much happening.

I saw an apraxic struggle. I saw a nonverbal student being pushed through a door in a frenzy of movement, everyone shouting at the same time, bent over with hands thrusting at his back, pushing against the doorframe and struggling to stay upright. I saw too much, too much.

I saw a blur of movement and sounds coming at me from every direction, I saw the ceiling the doorframe the floor somebody’s hands everyone shouting. I saw the final thrust through the door, met with bright lights and cheering, everyone applauding the nice save!

I saw dizzy and disoriented.

I saw what he saw.

I saw a classmate who couldn’t respond to prompts because they were coming too fast, and who couldn’t comply because everything was being thrown at him at once.

He slumped against the gym wall and slammed his head back. The act was met with a sharp reprimand from a by standing aide. And I know what they saw.

They saw defiance. Headbanging behavior. A tantrum.

I saw a student trying to block out external input. I saw. Everyone else gawked and chattered as the other kids did the warm-ups. I stood by helplessly.

I saw a humiliated man sitting against a wall in a corner, helpless and outnumbered, with no way to communicate.

I saw what he saw, the flash of students flying all around me and I saw people surrounding me, cheering, cheering for the aide as though it was some big victory to drag a student back into a classroom. I saw the world whirling around my head and it hitting the wall just to drown out the noise.I saw that nobody was asking themselves how he might feel. I didn’t just see the defeat, though, the lack of dignity or respect; I saw humiliation. Oh, yes, I saw. Pain.

I watched in horror. I felt for him. I felt with him. An aide, concerned that I had left, asked me if I was ok. Then she smiled at me knowingly. Chuckled, “He’s having a little fit.”

No. That’s not what I saw.

I saw an overwhelmed student trying to escape a hostile environment. An attempt to find a safe place, or a bathroom, or some water.

I saw a hasty and disjointed “rescue” that fried his emotions and ability to think. I saw visual, auditory, vestibular and tactile input slam him like a truck. I saw vestibular upheaval, and I saw desperation and fear and frustration because nobody understood, not one of them.

They saw a fit.

They didn’t see what I saw.

*****

I know, I mouthed across the aisle. It’s ok. I know. He smiled back at me.

I know.

The bus engine rumbled, and we began to pull out of the lot. They were still talking about him, imputing motives based on their own experience. I knew that he could hear them. That they didn’t really care. That it wasn’t my place to correct them. To try and educate them. Not the student’s place.

I saw the look on his face, and I knew that nobody understood.

He sat alone, leaning against the vinyl of his seat, his expression fraught with distress, his eyebrows knit. I knew that they were fine, and they could sit there and casually theorize about it, but that he was still coming down. I saw the look in his eyes. I didn’t know what to say.

I saw his hand, resting on the seat. Hesitating, I leaned into the aisle and placed mine next to it. I didn’t know how else to say I support you.

His thumb wrapped itself around two of my fingers, and for a moment it was like that. Then he lifted his hand and took mine in it.

I squeezed. I know.

We stayed that way for about a minute. The bus rumbled down the street, curving around the corners, my hand in his.

They said I helped calm him down. Sometimes people underestimate what it means to acknowledge someone’s humanity. To see it. I don’t know what they thought my gesture was, but we knew what it was. A show of solidarity. A quiet one, not a trumpeting fanfare, but a whisper. I know.

This is what I saw. Very different from what the teachers saw.

I don’t know exactly what he saw. I believe that it was terrifying.

But I hope . . . I hope . . . that after the terror . . . I hope that he saw a friend.

This was posted on the “Writer’s Almanac” daily poems. I’m not sure how I feel about it as a poem, but the words within are beautiful. As a mother of an Autistic child, who will one day become an Autistic adult, reading this comforts me. It helps me feel better about my child growing up, and one day going to college. It helps me believe that there are at least SOME teachers out there who are willing to try to understand their students, and to help them.

Gifted and Talented
by Krista Lukas

For my teaching license, I am required
to take a class called “Mainstreaming,”
in which we learn about every kind
of kid who could walk or be wheeled
through our future classroom doors.

Not the blind, the deaf, and the handicapped,
but students with
blindness, deafness, developmental delays,
autism, moderate to severe
learning disabilities, hyperactivity,
attention deficit, oppositional defiance
disorder, and so on.

The instructor, an elementary
principal by day, who outlines
each chapter and reads to us
these outlines each Wednesday
from six to nine, devotes
one hour one night to the subject
of students with
gifts and talents, who might also
come through our future.

Regarding special programs
for such students, one teacher-candidate asks,
“Do you have to be gifted to teach them?”
“No.” The principal-instructor
shakes her head, as if
such a thing would be impossible.
“Not many gifted people
go into education.”